DEMENTIA IN SOCIETY
Living with dementia and bereavement Helen Rochford-Brennan is a member of the European Working Group of People with Dementia (EWGPWD) and was Chairperson of the group from 2016–2020. In this article, she tells us about her experience as a person living with youngonset dementia, having lost her husband and partner of nearly forty years. Helen and her husband Sean lived together in a rural area of Ireland, where she is now living alone, navigating bereavement and grief during the COVID-19 pandemic – an already difficult and isolating time. Last autumn, as I thought my life was beginning to settle down after COVID ‘cocooning’ (isolating), my husband Sean was diagnosed with lung cancer. We were home alone, as our son Martin works in London. There are no words to describe how both of us felt. Sean worried about what was going to happen to me and I could not bear to think of how painful his illness might become.
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I became a person with Alzheimer’s caring for somebody who was dealing with a serious illness and a rigorous treatment plan. It was daunting.” We spoke to Sean’s consultants about various options of treatment and put a plan in place, which meant that I became a person with Alzheimer’s caring for somebody who was dealing with a serious illness and a rigorous treatment plan. It was daunting, as we live 65 miles from the hospital. Worried and frightened during lockdown We decided to stay at a hotel which, luckily enough, we found open near the hospital, so Sean could have his treatment. Staying there meant I did not have to drive every day and it was less strain on Sean. But it was not easy; I found cocooning in a hotel bedroom with somebody who was very ill extremely difficult.
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It was really impacting on my brain and even though I tried to write everything down, I had trouble keeping his medicine plan in order. We took a walk when Sean was able, but for many, many days it was just us cocooning together through a pandemic, in one room, worried and frightened. There was nowhere for me to turn, I felt that I needed to forget about my needs and focus on the person I had loved for almost 40 years. The hotel staff were amazing, when they saw Sean’s health diminish and how I struggled each day. In a way, they became my new family, my bubble. Family support Our son Martin came home from London and was able to work from home and take care of our dog Lexy. He spent as much time as he possibly could with us and we were so grateful to see him. I am conscious that, as an only child, during those months, Martin’s world was either at home alone during a pandemic, or at home with two people with changing medical conditions, a job to do and a dog. Neither situation was easy.
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There was nowhere for me to turn, I felt that I needed to forget about my needs and focus on the person I had loved for almost 40 years.”
Helen Rochford-Brennan
Through this time, I felt heartbroken for Sean, and for all of us, that the end of his life was so painful. But I am glad that Martin and I were able to spend the last five days of his life with him in hospital. Sean talked to us before he died and, like all good husbands and dads, he had left his instructions! Martin was to take care of me, and I was to look out for him, but I was also to continue with my advocacy work. Sean knew that this really empowers me and gives me the will to keep going every day, because it has a great impact on my brain power. I think of that promise I made to Sean, as I write, now, about my experience as a person living with dementia and with bereavement. Nowhere to turn to I found there was nowhere to turn after Sean died. I googled and googled and wondered where I could find help for somebody with dementia dealing with grief but there is nothing. There was a lot of information about breaking the news to the person with dementia about a loved one’s death but nothing about how I might cope after that initial moment. Luckily, I live in a wonderful community and the community reached out to me as best they could in times of COVID.
